DEALING WITH FATIGUE CAUSED BY MYOTONIC DYSTROPHY

This is based on a lecture delivered at the yearly meeting organized in October 2000, in the Netherlands, by the “Werkgroep Myotone Dystrofie” for patients and other people involved in myotonic dystrophy. Dr. Karlein Schreurs, Health Psychology, University of Utrecht, prepared this lecture. Email to the coordinator of this group: cees.duijndam@wanadoo.nl

Introduction
The work group asked me to prepare a lecture about dealing with fatigue. So I expect that fatigue is a problem for the majority of my audience. The Muscular Disease Association of The Netherlands (VSN) also publishes this. Out of 900 articles on MD (Myotonic Dystrophy) published during the last three years in the international press, eleven were dealing with fatigue. It is obviously a serious problem for many patients but up till now few research-workers pay attention to it. From where is this discrepancy?

Apparently many patients with MD consider fatigue as a symptom that is part of the disease and cannot be cured. I do hope that I can convince you that this is not always true. It is indeed possible to take measures.

A second explanation for this lack of attention for fatigue with MD is the fact that it is difficult to define fatigue.

What is fatigue?
The question seems superfluous.  Everybody knows how fatigue feels.  However, often we do not mean the same thing.  Normally we think of fatigue when a person has worked hard and consequently is physically exhausted. read more

Causes
What causes fatigue in people with MD?  This is an unclear area; often more causes can be identified. Muscle-weakness is a symptom of the disease; the disease causing slowness, apathy and lack of initiative may also affect the brains.read more

The physical vicious circle
The normal reaction to physical fatigue is rest.  Rest does not help when fatigue has a chronic nature.  As rest is the accepted remedy for tiredness, most people will rest even more than usual, also influenced by their environment. read more

The psychological vicious circle
The second vicious circle relates to psychological factors, which either maintain or intensify fatigue.  If someone feels tired very often he or she may find out that resting hardly helps and therefore it seems that fatigue can hardly be managed. read more

Remedies
You may wonder how to control the situation.  There are no instant solutions but there are a few approaches.  A first way to get some control is to identify the effects of fatigue, is there a medical solution? read more

Conceptions
Research among people with a chronic fatigue syndrome shows that fatigue is intensified and maintained by high standards and strong principles. Demanding people who are perfectionists run the risk of trying to pursue the impossible, which will exhaust them.read more

Social aspects Your partner is also facing the consequences of your disease.  The partner wishes to support but is also troubled by fear, concern and helplessness.read more

FATIGUE DIARY